How have you all been? Well its not as long as I normally leave my updates but we have news, BIG News – On his second attempt, Finn has been accepted for the SDR (Selective Dorsal Rhizotomy) Operation in St Louis, USA. We will be heading over there sometime in January 2016 and this is a hugh milestone for our family - especially for Finnbo and we want to say a massive thank you to each of you for helping us to get to this stage
A lot has happened over the Summer and I’d like to take you all up to date.
The last time we talked we were looking forward to Dave and Jo’s Wedding (and Risto’s Christening) and a Tough Mudder and open Mat. Well Jo and Dave are married and Risto is under God’s protection – woo hoo, the wedding was a fantastic event and their incredible donations raised well over €10,000 via the Go Fund me web site, direct payments to Finns Bank account and other donations. Many who I have met have expressed what a generous gesture this has been and I want to re-itterate our heartfelt appreciation for the newest Dempsey’s support, although all the Dempsey’s, Williams and Bausor’s deserve a group hug and thank you for their ongoing help. Ahsbourne Jiu Jitsu have run an open Mat and raised an impressive €300 for Finn.
We have always been open to new ideas and now that Finn has been accepted we will be pushing harder on the fund raising front. Most recently, my younger brother Vinnie (the Pharmacist) contacted an old friend of his, Dan Clifford, who is Bank of Ireland Branch Manager in Rathmines, hosted a Fix wheel cycle in the Bank - cycling' 250k - 50k a day to promote internal sites. Vinnie even did a stint – see pic.
In preperation for the Operation in early 2016, we are continuing with Crania Neuro Rehab Centre in Newry. Dr Goshi treats Finn twice a week for 3 hours in Newry (about 80 mins drive from Dublin) and has made great progress especially in his leg strength.
We have booked into MP Fitness in Perth Scotland with Mike Poole, once before the Operation in October for 2 weeks and again in April 2016 to do lots more strength and conditioning work. This is important as Finn and Claire work on repetition of exercises to help gain Muscle memory on what exercises he has to do, in what order and how his body should react. This will be crucial post Op when he has no Tone and very reduced strength initially and will have to rebuild over a 6-9 month recovery period
The goal of the SDR operation is to reduce high Tone by removing damaged nerves from Finns back. Dr. Parks and his team will open Finns spine behind his kidneys, test individual nerves and establish which are in spasm. Those that are, are cauterised (burned) leaving only the undamaged nerves but the body is greatly weakened. Tone causes rigidity and leads to balance issues, to date, Finn uses his tone to perform daily tasks so once removed he will be very weak and have to relearn movements without his tone over several months, although his body will no longer be fighting against him.
How does Finn feel about the operation? He is infected with our anticipation but is now also aware that it is a big operation. We have talked about it and we believe he understands as much as a 6year old can. As you can see from his walker walking he is now excited about how he can be independantly mobile. Naturally he has a tendancy to drag his toes as he was looking down at his feet so I invent a game “Blind Mans tag” but he does raise his knees now!
Hard to remember he is just a kid. While on a holiday nap, I asked Finn why his mummy and daddy loved him. He looked me straight in the eye and said .. because I have cerebral palsy?? I had to break it to him that it was just because he was Finn and that all mummies and daddies jobs were to love their kids. He just gave me a toothless grin and a kiss before nodding off.
Apart from losing his 2 front teeth, Finn is flourishing. We are just back from holiday with his UK cousins – Jake and Esmee where he swam every day, played bingo and thoroughly enjoyed the cheesy evening entertainment. He won a medal for swimming by himself and loved going on the stage to dance at the end of every night with the other kids.
About to return to school again – Senior infants. We are very proud of Finn in completing his first year of school and looking forward to the challenge of Senior infants
The figures, the operation itself is about €50k and Finn may possibly have to undergo additional ops such as hamstring and calf muscle lenthening if his calves have contracted from lack of continued use. We anticipate an additional €50k for rehabilitation, additional equipment and physio support and follow ups and I will be compiling a detailed list over the coming months as unfortunately the Irish Health system do not support this procedure and we are self funding the entire costs, with a little (lot) of help from our friends. There is no other option in our eyes. Finn may not be the ideal candidate for the Op but from the Doctors official notes he will improve significantly in multiple areas that will result in him have a much wider range of movements resulting in his overall quality of life improving beyond what we could have ever hoped for.
So a massive thank you to everyone who has helped out so far – we really appreciate you all xx . We welcome new ideas and bear with me when making suggestions as there is only one company admin here – me. But do share Finn’s story with your friends via facebook, twitter, carrier pidgeon or smoke signals – the more people who know the better. What can Finn do ….. ANYTHING!!
I’ll start with the usual apology for being away so much but it has been a busy 6 months. I thought it was opportune to give you all a long awaited and much requested update..
Let’s start with the important detail - Finn is doing fantastic and is a tremendously happy child who is loving his first year in St Pius X Boys school. He has a busier social life than Claire and myself combined with play dates, movie nights and of course judging Britains Got Talent.
As you can see from the videos Finn is literally making great strides of his own. I cannot overstate what our little fella has put in to make these huge steps forward in not just his treatment but also his own perspective in life. We were told not to have expectations of Finn being capable of walking even aided, so its great to play Finn’s favorite game “What time is it Mr. Wolf”, where he chases daddy and he is always practising for his schools sports day.
On the finance side, your donations to date have payed for our twice weekly physio trips to Newry to the Craniaa Neuro clinic with Dr Goshi and his wife Ramya. They run through a full programme of physical movements and finish with Finn on a treadmill and can take a lot of credit for maintaining Finn’s flexibility, building the strength in his muscles and getting him walking. www.craniaaneurorehabcentre.com
The last time we applied for the SDR operation we were told he wasn’t strong enough and they wanted him more independent on his walker and finally about a month ago he starting being able to walk by himself on it which was an amazing development. We have been working closely with Mike Poole – MP Fitness - in Scotland who has developed a new routine for Finn to prepare him for the op and we are currently applying again. Come rain or shine, Claire has Finn bouncing on physio balls and rolling for treats. Claire’s dedication is nothing short of amazing and it is great to see it actually paying off. We are conscious of not pushing Finn too far too soon but I can assure you he enjoys his sessions and they have a great routine where I can hear Finn in the background trying to bargain with Claire about “How many more mummy!” Although recently we are moving from Mummy and Daddy to Mum and Dad which I have just noticed. We combine official workouts with Swimming, where Finn is now swimming independantly (with armbands) and is so proud of putting his head under water that he forgets to breath. And of course, his bike – you can get a bit of his character in the clip, he has a great sense of humour. And every Friday he still loves his horseriding in Festine Lente.
If accepted, the surgery will involve a major operation on the nerves in his spine and possibly additional operations to extend his leg muscles but the daily workouts are helping reduce the normal muscle decline experienced in kids with CP. We would spend 5 weeks pre and post op in the States followed by intensive ongoing physio back in Dublin
I must also say a special word of thanks to Finns grandparents, all of them Maureen & Gwil, and Aine & Vincent – their constant support enables Claire and I to have a life outside of Finn, which is necessary and much appreciated, with the added benefit that he is growing up knowing these guys and truly enjoying their company
First and foremost, my big bro, Davie is getting hitched in Austria in June. He tricked Jo into saying yes and they tie the knot on June 13th in a joint Wedding ceremony & Christening of Risto Daithi Dempsey in Church of the Holy Cross. In what can only be said as a staggeringly generous gesture, Jo, Dave and Risto have not opted for the normal wedding gift list and instead have nominated Finn and his trust fund as the main beneficiary
This is above and beyond and I cannot express our gratitude enough to the happy couple. What do you give to the couple who have everything…. anything is appreciated
Facebook site https://www.facebook.com/JoDavidsWedding?pnref=story
As to why I signed up for another 20 Km assault course including electrodes in water – see event one. To be fair, Dave and I did a Tough Mudder in Germany last year and despite my gloomy outlook it was surprisingly good fun, and I have also dragged my good buddies into stumbling around the bog in Summer. I might be better off taking odds on who survives/finishes?
As a lovely example of random acts of kindness, I have recently been taking a lot of taxis and met a cool driver, Alan McEvoy, who after hearing of me rambling on about Finn has offered to host a night with his band “Madness Style”– Details to follow but it makes you believe in the goodness of strangers
We are also open to any and all ideas – once accepted we will have a dedicated push to generate as much funds as possible
Wishing you all a great Summer and keep an eye out for pics of all events
Just a quick update to say a few "thank you's". I have recently completed the Tough Mudder Assault course over 18Km in southern Germany with my fellow tough mudders Alex, Niko, Frauke, Kai, Karsten, Mike and of course the main culpret Dave Dempsey without who we would not have signed up. Before and after pictures available and they are not pretty but the main winner is Finn. I must say a BIG thanks goes to Alex Leonard and Blackstone who have added over €2000 to Finns Fund. (Verena Letzerich, Craig Snyder, Marion Buten, Mark Moffat & Michael Whitman.)
Was it worth it?
It was tough but great fun doing it as a group and the Oktoberfest party we had afterwards was harder to recover from.
Take a look at the video on my facebook page below - it has been taken to illustrate to the hospital in America that Finn now has power in his legs and is more eligible for the spinal operation that we are still aiming for.
We owe you all a huge debt as Finn is now standing/ weight bearing on his own legs and cycling under his own steam - this surpasses most Irish doctors expectations and we really are seeing great improvements all round and his continued treatment has all combined to get him here.
A wee bit on Finn - He started mainstream school recently and is loving it - he has managed not to maim any other kids with his wheelchair as yet but I know that call is coming...
He attends the Physio clinic in Newry 3 times a week and manages to fit in Horse-riding, Speech & Drama and a swim with Daddy in between extra sessions with Mammy so it's all go and as normal as everyone else with kids. Most importantly he is a happy and developing a wicked sense of humour so my work is done.
Will update with news of progress soon - I promise...
Quick update on Finn - Tonight he is The Childrens hospital in Crumlin recovering from having his tonsils shaved - he is in great form and is gorging on ice cream watching Frozen on DVD.
We are continuing with the clinic in Newry and Finn seems to get stronger by the month and is now cycling his bike regularly around the green in front and daddy in back pushing away
My Cousin Kevin Boyle has just completed the Vancouver Marathon with Finn as his nominated sponsor which he completed in 3 hours 48 minutes - excellent result especially for a first marathon! He raised an amazing €1400 so he is owed some well deserved beers next visit home and maybe even a steak dinner. A huge hug and thanks over the pond to Kev and a hi to sister Maria and mum Theresa.
More updates to follow with photos and vids of Finn in action and a quick preview to my next challenge - The 18KM Tough Mudder in Munch in Sept
We held a fantastically successful Race night in town on Fri 28th Feb hosted by Sinead McCaul, Stephen Hanna, Ann Marie O'Connell, Patricia English and Bernadette "B" Gray and ably assisted by Cian on the night. Even before the night started the crazy gang had sold out all the horses and had started double selling the races. In the name of a greater good the guys knew no shame in finding and filling the best list of prizes and spot prizes I have ever seen with multiple tablets, PC's, Vouchers, Wine, Concert tickets and on and on. Then they started on selling tickets and advertising the night and they were a sight to behold, I certainly am making a point of keeping on there good side :-).
The night itself was great fun - Stephen and his brother Dave along with Eric and his funky shirts ran the night brilliantly and everything went off with
without a hitch. There was a great turn out from HP, the Dempsey family and many others and I honestly believe there was a fun atmosphere on the night. A few drinks and the excitement of the races got everyones pulse racing - Paul Congdon deserves a special mention for a moment of madness in a bidding war - much appreciated. I have attached some pics from Sinead of Finn watching the races atop his own horse for the night.
Finn loved the night and was slightly disappointed that the horses weren't actually in the bar. He was meant to leave by 9pm but was still going strong well past 10 - don't tell child services. We told him he won the last race and he was delighted - so much so that he woke me on early Saturday informing me he was rich and that he was spending all his five euro winnings on the music from Disneys Frozen, which he loves.
And now for the drum roll, den den dennnnnn.
The initial target was €2-3000 but the guys were so good they quickly readjusted and aimed for 5k. Incredibly with all donations to this page, sponsors, ticket sales and revenues on the night we broke the €8000 barrier - unbelievable. We had a review meeting on last Monday and this total blew me away but they weren't finished yet. Oh no. Not only did they chase additional donations they "encouraged" the winning horse owners to donate their winnings and foolishly nearly all the winners did. The final, final total is €9,121. WOW - A huge thanks to everyone who helped make the night, the success it was and especially to Sinead, Stephen, Ann Marie, Patricia and B - as I said on the night I am constantly pleasantly surprised by people's bottomless generosity in giving their time, effort and hard earned cash in support of our Finn.
Those who met Finn on the night hopefully saw how a glimpse of what kind of child he is - although he has cerebral palsy he is genuinely a very happy kid who has an increasingly cheeky sense of humour that I blame his mother for !!!! But on a serious note - this money raised will go directly into his new Trust fund account and will be used to cover his treatments in the Newry (3 visits a week) right up until he starts Primary school this September which is just amazing and I have run out of words to thank everyone - so I'm making one up - splendiferous
That's it for now - look out for the next event - possibly a Ball/dinner in September or I may be forced into Hell&Back again this Summer - who knows.
We already have an Official Irish Rugby shirt signed by all the current team including BOD that Jason Crumley wangled out of Carton house and a snooker cue signed by Ken Doherty from Sinead so anyone interested - contact me - I know - I am shameless - I learnt from the best
Hello everybody and a very belated happy new year (I can't believe its February this week)
As you know, Finn and Claire spent 6 months of 2013 in Toronto and in a final push to prepare Finn for main stream school this September they returned this January for another months treatment. Apart from the -30 degree cold, this visit has been a success and I will post some new videos next week when they return. We are trying to strengthen Finns Core (torso) to better control his limbs, as well as using his Walker to start weight bearing on his legs for the first time. Local'ish, we have just found a new clinic in Newry, First Steps. The treatment on offer differs slightly from the Toronto clinic but has the same goal of getting Finn independently mobile and has the geographical benefit of being a lot closer than Canada, so we can continue to get on-going treatment year round.
Well, like the buses, there's no update for a long time and then 2 come along in a row, one on an upcoming race night and the other, some details from a Halloween Fancy dress party hosted by June Hoey in October
Sinead McCaul & Anne Marie O'Connell friends and HP colleagues are organizing a Race night this February 28th upstairs in Doheny & Nesbitts along with their fund raising mafia (Patricia, Stephen, Dave & Fiona) I don't know what tactics this team are employing but judging by the volume of great prizes and donations, they must be making offers that can't be refused! It's all for a good cause The response so far has been overwhelming and the HP team are really pushing the boat out here so everyone is invited along to make this night a great success.
June Hoey ran a Fancy Dress Ball in the Courtown hotel over Halloween with her daughter Stacy. The Courtown Hotel provided the function room and the food free of charge. Thanks to Roger for the tickets and posters and the Gorey Guardian who sponsored an Add. Avril Morris helped Stacy and June with decorating the room and I'll post some of these if I can convince June to share them. A huge thanks to all the guys from Court own, Riverchaple and Ardmine who supported the event and of course the angel that is June, who just dropped off a cheque for €1001
And a final virtual hug is sent to our Canadian Cousins for putting up with Claire and Finn, sorry I meant putting Finn and Claire up! Again!
That's all for now, so I promise to post some new vids next week and you can make a note in your diaries for Feb 28th, you might even make money !!!
Well I'm back and yes I've been negligent in my updates but life is crazy and with Canada trips we are always playing catch up. I hope you are all in good health. We have reached 20% and I wanted to acknowledge this milestone with a quick update and thanks to each of you who have taken an interest in Finn's Journey
Finn is now on his 4th and final trip to Toronto for this year. I'm just back from 2 weeks with Finn and Claire is completing the final three. He is making great progress as you can see from the clips "“ on my facebook page. The days are busy with 3 hours of Functional Physio and 1.5 hours massage therapy but Finn rarely complains as long as "the Wiggles" are on the iPad. We have started Finn on a walker and his progress is slow but he really is making getting stronger daily
We had a great time, father and son bonding. With both surviving being a good start combined with bribery of daily presents for "no tears" and visits to Wimpys (which we don't tell Claire about) for Pancakes. The family did have one day together where we visited the new Toronto aquarium for a really enjoyable family day out.
I don't want to turn this into a poor Oscars speech dominated by thank you's but it would be remiss of me not to single out a few special people. Most recently, Stacey Daucer's mum June hosted a highly successful Halloween fancy dress party, Jason Crumley completed a half marathon and kindly had Finn as his named sponsor. He must be a sucker for punishment as I believe he's just signed up for a full marathon so many happy trails to him. Our Canadian cousins for putting up with us continuously in 2013 however it's been a real pleasure rediscovering this side of the family. Oonagh Collins who walked the Camino in Spain and hosted Coffee mornings and Larry Brophy for his continued support .
Both our families who never stop helping and are greatly under-appreciated
Rathgar Tennis club
Our Neighbours in Terenure
And of course my wonderful wife "“ who deserves the most credit for putting up with ME
The soppy bit - They say a journey of a thousand miles begins with one step. Finn's first steps may be a thousand miles away but we will get there, as we too, also have to believe, Finn can do Anything. Or I am just too stubborn to take "no" for an answer and will change the rules to get what I want. You decide.
Oh and in case you were wondering, both Claire & I are incredibly proud of Finn and he surprises us daily.
It's been a while but I thought you all deserved a quick update of Finn and what he's been up to this Summer.
As usual, I like to start by thanking every individual who is supporting us, either financially or otherwise. It is tough but even knowing that others are interested in Finn's progress helps to keep us going.
Well Finn and Claire have returned to Toronto for the past 2 weeks and have 3 more to go in our 3rd session this year. Incredibly Claire is doing all 5 weeks by herself this visit and I am missing them terribly. But this does not mean I am not taking advantage of their absence and spent a wonderful weekend in Donegal last weekend with the Dempsey's under the baking sun.
I am talking to the Canadians immigrants regularly on Skype and I can see Finn growing in strength every week he spends in Toronto. This time Nathan the Physio is focusing on getting Finn to start using his hands and pushing down rather than his usual arm curl.
As a part of his weekly Irish treatment we also go Horse riding every Friday in Festina Lente in Bray. I have posted some links to video taken by my sister Gillian with Claire and Finn in front of the camera with Jacinta the Trainer. The horse riding is to help Finn understand balance with motion and also to strengthen his trunk in general.
We also hope to start Finn on a walker - a Zimmer frame for kids on this visit. Once he starts to master this we will submit more videos to the clinic in the US for the operation. They are looking for Finn to be visibly stronger before he becomes eligible for the major operation. I know he can do this and it will make an incredible difference to his quality of life.
Unfortunately, apart from his physical progress Finn seems to have inherited his Daddy's sense of humor and is already trying to make up his own jokes so this may be his biggest handicap in life. On a serious note, Finn did have a psychological test to define his eligibility for normal schooling and he passed with flying colours so this is another important milestone and hi is scheduled to start in Pius X in Sept 2014.
Thanks again for the support - and repeat after me. Finn can do ........ ANY - T-H-I-N-G
And a special thanks to my wife Claire for all her hard work
Hello to everyone,
I told you it would not be as long before my next post and here we go again.
Continuing on from Finn's Fun day and the Trintech reunion I have now been challenged to do my first fitness challenge to help raise money for Finns treatment
For a laugh - please visit www.hellandback.ie Apollo - June 15th - yes that's 13 days away. It's not as if this has been sprung on me - I was challenged to do this by Shane about 3 months ago, I have just chosen to ignore my training until now.
It's a 10k mountain challenge through steams, obstacles, bogs, rat infested tunnels and electric wire
There is a team of us doing this mad run, all of us in our 40's (our age and for some our waistlines!!) Although some are pushing the 40's boundary Seamus and Janners, I write this knowing that both these old men will stagger across the finish line ahead of me or possibly carrying me.
Shane Henry - the instigator and possibly the fittest
Seamus Hayes - Grandad - best swinger in town
Jan Hein van den Akker - Salty Dog
Dara Voyles - Has studied how to jog and understands the theory
Des Wilson - My main challenger for last place but always a dark horse
This group is made up of senior engineers, Project managers and highly capable individuals and we have all known about this event for weeks and yet the only thing we have agreed upon is not the fund raising activities or our training regime but where we are going to drown our aches and pains the evening after.
But seriously, thanks to all the guys for volunteering for this and for helping out with Finn. And while do intend to have a lot of fun doing this we do need your support as always. If you have already donated please share this link via Facebook or MySpace to get the message out and if you are seeing this for the first time, we appreciate whatever support you can add. Donations can be given directly to the guys or if you donate via GoFundMe - please put the persons name who you are supporting.
We could have a side bet - who will finish first or more likely who will be finished by the day.
Finn Oscar (6) was born at 29.5 weeks to Claire and Michael Dempsey in 2008. We all live in Dublin, Ireland with our white Alsatian Sophie.
Due to Finn's traumatic birth he had a bleed in his brain that resulted in him being diagnosed with quadriplegic Cerebral Palsy - basically the part of the brain that controls his gross motor skills and means he cannot control his arms and legs as normal. Irish doctors classified him as having a minimal chance of improving his position so we have sought further advice abroad. To date we have been to clinics in Slovakia and we are currently in Toronto to give intense physio to Finn and after constant work at home we have seen small but significant improvements - he can now sit independently for short periods of time and is using his left hand and he loves using the iPad.
Last year Finn was lucky enough to start working at an amazing clinic in Toronto, Canada called Health in Motion where he does 2 hours each day in physio and 1.5 hours of massage and stretching. He went there 3 times last year and he is in the middle of his first trip this year. We are planning 3 more trips this year so he will be spending 20 weeks in total in Canada. We are lucky to have amazing cousins living over there whose hospitality and support have made it all the easier to be away from home for such lengths of time. The improvements he has made in the last year have been amazing, he has learnt to roll, sit by himself and is almost crawling with just a little support. We are really excited to see the results that this year will bring.
Our goal is to help Finn lead as normal a life as possible. We intend to get Finn strong enough via physio so that he can be suitable for a spinal operation to remove his high Tone (rigid arms and legs) - It's called SDR - spinal dorsal rhizotomy, performed in St Louis in the States. The spine is opened and each nerve is examined and the damaged nerves are removed. By removing the damaged spinal nerves it gives him a better chance to balance himself and he will have more control over his limbs and general movement. The operation costs 50K and is obviously serious but is it equally important to follow up with intense physio as the operation removes damaged muscles/nerves in his spine and need to be built back up again over the following months and this accounts for the remaining funds as we intend to hire an SDR experienced physio to live with us for 6 months post Op
Finn is a delightful child and brings great joy and happiness to our lives. He is developing his own personality and has the curiosity and interests of a normal 6 year old
Your donations will go directly to help Finn's physio and operation and large or small are all greatly appreciated. We welcome your comments and questions
Great to hear the latest news re the intended operation. What a brave young man you have there. We really hope that all goes well for you all and Finn keeps that smile despite the initial increased weakness. It will be worth it in the end Finn. xxx